When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….
I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.
Wednesday, June 22, 2011
I should know better.....
Saturday morning she was the same. She wouldn't drink much and was really tired. So she had a sleep for an hour or so and when she woke her hands and feet were dark blue and cold. I wasn't overly concerned as this happens every month or so, but they aren't usually that blue. It took about an hour for them to come right, and they came back to normal colour for half an hour before they went blue again, and she started to go into respiratory distress and she broke out in a fever. So around 3pm I called the ambulance, and they took us for a trip to hospital. We were taken straight to resus where there was a Doctor waiting to see her. Within 5 mins of entering emergency she had a chest xray, and had cream put over her wrists to get a drip put in. Her temp was now just over 39. After she was stable we were taken to the Paed end of Emergency and from there Veronika was admitted to the Paed Ward after the Paed Reg had been down to see her.
When we got to the ward, as her chest Xray was clear, her urine speci that I took in with me(Yes I am one of those mothers that as soon as she begins to show signs that we might be needing a trip to hospital I get a sample if I can, but hey the Doctors really appreciate it) was clear, and they couldn't hear any creps or crackles in her lungs, the Doctor on the Ward, said it could be anything from maybe a viral thing to meningitis, worst case. She wasn't overly concerned that it was meningitis, as she was "too well to have meningitis".
Her temp maxed out at 39.6 during the night, i guess the only blessing about her being so unwell was that she was so lethargic that she dozed most of the night..
At some point during the night I reflected on Veronika's Journey thru the Emergency Dept, I do admit I shed a tear, not because it's awful seeing your child so unwell, she was being very well looked after, but because this was my 1st trip there since Karina my hospital buddy, passed away just over 2 months ago. In a weird way I was blessed Veronika had deteriorated so much, because she was seen straight away, which meant I didn't have to sit and wait in the waiting room without Karina.....I think about her every day, I love her and I miss her.
The Doctors didn't want to give Veronika IV antibiotics as there was no real indication there was an infection, and she has had so many antibiotics in her 3 years, we don't want her to have any if its not necessary.
On Sunday, I was given another reality check. I know to well that there is always someone worse off than us. Those closest to me really know what I mean. I guess people are always concerned about Veronika, which don't get me wrong, because I really appreciate every ones concern, care, thoughts and practical help. I had heard that one of Veronika's friends was also in hospital. A little girl that Veronika went to early intervention with when they were babies, and I often wondered why I hadn't seen them for a while. I didn't know why she was in hospital, but when I ran into her Mummy in the morning, well lets just say, there is always someone worse off that you. And if respiratory distress, and a raging temperature was all this Mummy had to watch her 3 year old go thru, was all she had to worry about, life would be easy. It kind of put everything back into perspective this week. Yes I was really concerned about Veronika and her health, and when she would be well enough to go home, but really I had nothing to worry about compared to this Mum, one of the most Positive, Amazing, Strong People I have met.....if you get the chance to read this, you will know if its you I am talking about. I start to get a little teary thinking about how Blessed I am that all I have to worry about is that Veronika has Down Syndrome, Cerebral Palsy and a Congenital Heart Defect.....on my journey with Veronika over the last 3 years I have met some of the most amazing people. People who take everything day by day. Jodie who's son Hamish has HPLH Syndrome, the worst heart condition you can have, and Vanessa who's son Toby was born 16 weeks early, and has severe apnoea's that require her to resuscitate him at least once a fortnight.
For now though I have had minimal sleep since Saturday, so I best be off to get some sleep or goodness knows what I will waffle on about next! I do however promise that I will tell you more about our time in hospital, but for now I just have to leave you with the quote of the week......from one of the Nurses after the Doctors did their rounds this morning......"It would of been a brave consultant(Paediatrician) that would of told you that Veronika had to stay another night".....yes it would of, and just as well he didn't say that, instead it was that we could go home.